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Thread: long term chronic pain-last doctor's visit, rotating opiates

  1. #1

    long term chronic pain-last doctor's visit, rotating opiates

    Hi,
    I'm new to the forum. I've had RSD for about 10 years, my pain has increased and I am significantly disabled. I also have a fatal degenerative brain disease, abdominal migraines and degenerative disc disease. My RSD pain use to be clearly identifiable but in the past few years, my doctor suspects it may have spread and I have many other neurological symptoms that may be associated with pain.

    I spend most of my time sitting in a recliner and I sleep there as well. I have had all kinds of therapies and injections which didn't help. I am taking Fentanyl patches, methadone and dilaudid liquid, Keppra and Namenda for my RSD.

    During my last visit to my doctor, who I have to fly to New York to see, he explained new research about chronic pain and the possibilities of Namenda treatment which I was already taking. He increased my Namenda and he wanted to rotate my opioids because they are trying that with many other patients. Unfortunately, I am on Fentanyl and already on Methadone I still need my patches for pain control and if I try to get off them the pain increases. I am allergic to Morphine and I cannot take any tablet form of opiods, I am on liquids. So there is no way to rotate my meds to try to help with issues of tolerance. He increased my Fentanyl strength and increased my dose of Namenda.

    I am still not having adequte pain control and I have accepted that I will be in pain the rest of my life which now will be considerably shorter.

    I was wondering if anyone had heard of any other drugs they are using for pain control? I am having some success with meditation and prayer but for anyone who decides to take that path it is not easy work but it is worth the results. I had a teacher who described the untrained mind as an wild horse and mind exercises, meditation etc. as tools to train the horse so it is able to perform useful functions. You do not have to have some elaborate mantra, you can use simple sounds or words repeated over and over again. You may start to experience frightful or extremely pleasant visions or sensations. You can note these experiences but don't allow yourself to become so swept away that it stops your concentration. There will be other visions and experiences that may be revealed to you after you are in an altered state meaning a state that is not sleeping or awake. I still have a long way to go but I have acheived some total pain relief for very short periods of time.

    That means the world to me.

    The other question I have is I read recently that if RSD moves into its last stage that there is potential organ damage. I am starting to have lab results that suggest possible abnormal function in some of my organs and doctors have not found a reason for this and it is not likely that is connected to my stage of the degenerative brain disease. If anyone has had any experience with this please let me know.

    E.

  2. #2
    There are other drugs beside opiates which may be effective for neurological pain such as lyrica (pregabablin), gabapentin and other anticonvulsants, also tricyclic antidepressants such as amitriptyline and nortriptyline. I take a combination of lyrica and nortriptyline which is parially effective for me. It doesn't rid me of the pain but it is more bearable. I also take tramadol which although doesn't come in a liquid does come in dispersible tablets. There is a lot of information on neuro pain here, it's well worth doing a search if you haven't already
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